Monday, Aug. 11, 2008: One week old

Today we came to the hospital around 10 am, after dropping off Carlita at the ELC. Carlita was a little bit cranky this morning on the ride over and when we dropped her off; she also is still a little confused about what is going on with Luke—she asked this morning, “Is Luke still in Mommy’s belly?” and of course, we had to tell her that he was out of her belly and at the hospital. And then she said, “Luke’s an angel.” So cute!


After dropping her off, we headed to the hospital and the NICU. We met a new nurse (Kathy), who told us that Luke was continuing to do well, having good gas levels despite continuing to lower the settings on the ventilator (he is now at Oxygen level of 21, which is as low as they can go; and the f (frequency) is 25, and the pressure setting is at 20). They also have cut the Morphine drip from 15 down to 5 ml, and they have taken him off the antibiotics (has been seven days, so infection has been treated);he had a chest xray this morning, which they are evaluating. Depending on what the xray shows and how he continues to respond, they hope to continue decreasing the ventilator settings today and have him escavated (aka get his tubes out) from the ventilator tomorrow. He has significantly less wires attached to him and is way more alert, opening his eyes, moving his little arms and legs (and his left arm is a little mischievous, going underneath the tube and worrying the nurse that he will try to pull it out). He did have to be put back on the tanning bed and the cool shades (phototherapy for Jaundice), but that is not unexpected or alarming, because he has not been eating much. But, the doctors have decided to start GIVING HIM BREASTMILK today!!!!!!! WOOOOHOOOOO!!!!!!!
YEEEEEEEHAAAAAAAA!!!!! Mommy is very happy about this, and this should help with the Jaundice. He did well but threw it all up due to mucus in his stomach. That’s okay. Little by little.


Around 5:30pm we said bye to our little man and went and picked up our little girl. She was very sweet and we spent the evening playing with her. It’s strange to be sitting at home doing nothing and knowing Luke is in the NICU. It’s a bit odd to just sit (which I hate). I’m getting a lot done though (getting pictures and videos created about him) and of course pumping (which I’m very good at). It doesn’t feel we have a new addition to our family. It just seems like nothing. Just waiting and doing nothing. The worst thing for me. I must do – that is what keeps me going. I’m not like others who can just chill and kick back. Look, this is kicking back for me (blogging, playing with computer, etc). Hopefully our little man will be home soon and he can fill our lives up.

Saturday, Aug. 9: Balancing life with kids

During the night I woke up at 4am to pump and then at 8am. I needed to be out of the room by 9am so I showered and moved out. Luke seemed to have an okay night but his numbers were not looking good. Though they weaned him from 100% to 30% oxygen support, his numbers were going down hill. It seemed like he couldn’t get more weaned off. A new nurse was on (Karen) and a fellow (Kristie) who explained to me that his numbers got worst. They changed the “food” fluids in hopes that his numbers change (which they did). His morning x-ray did not look as clear as it did yesterday. In fact, they got worst. Talk about another transfusion was introduced and I was again in an emotional state. Karl and Carlita showed up with breakfast and ate. Karl went to see Luke while I played with Carlita (well she played by herself but I directed the fun). I needed to pump so Karl took Carlita to see Luke. They came into the room where I was pumping and Carlita stated “ Luke is an angel”. I just teared up! So cute!


We headed home for lunch and a naptime. Carlita and I went to bed but I guess she got up and Karl and her went to the pool while I slept for 2 hours. I woke up to a nasty phone call from my mother and I got up to watch some of the Olympics. Karl and Carlita returned from the pool and we heated up some dinner and headed back to the hospital. Carlita did very well, playing while I pumped and then standing by us near Luke. She really can’t see him and didn’t want to get near him due to all the machines and wires but she did as well as she can do. She did get upset leaving with Karl because Mommy (that’s me) wasn’t leaving too. Poor little girl! I’m sure this is all overwhelming, not having me at home and being able to cuddle and play together. And poor Karl who gets no time with Luke and is taking care of Carlita and me. The man is Super daddy. I don’t even know how he’s handling all this. I just cry and have little breakdowns. He’s cried and I’m sure is having his moments but we keep strong for each other and Carlita.


I spent most of the night next to Luke. I helped Kari (the nurse) do “care” and keep track of all the numbers. He got another chest x-ray done and it was getting better regarding the clearness of his lungs. His numbers were okay but just not good enough. Most likely a transfusion will happen tomorrow. I’m getting more comfortable with this because I know it’ll help him. It seems like he’s anemic and needs a boost. I hope this does this. One week is coming up soon and I just want to hold him and feed him.

Friday, Aug. 8 – An unlucky day

Today is supposed to be a good day, a lucky day with 8/8/08 but it turned out to be an unlucky day for us. Today was my release day from the hospital. Also the first day of the Olympics if you are paying attention to it. We slept very well last night. I pumped at 4am and saw Luke who seemed to be doing well. At 7am I got all checked out by my nurse and pumped again. We tried to sleep more but we received several phone calls from family and friends requesting a Luke update. We packed up and then my sister and mother came over for the last time because they are heading back home today. Actually Mother never came to see me and say good bye. She hung out in the lobby and was very rude to Karl as he helped Sandra get things into the car. Mother really was becoming distraction and needed to get out of here. I wish my sister could stay but she’s been wonderful staying the entire week. We also have been lucky to have our friend, Samanta (Luke’s godmother), be able to pick and drop off Carlita at daycare every morning and evening. Once Sandra and mother left, we got released from our room and headed home to unpack to repack. See, the NICU has family rooms that you can stay in overnight (you have to sign up for it every morning) and I signed up for tonight. We got home after going to our pharmacy to drop off my pain prescription. While unpacking, we realized that our Ipod Touch and wireless mouse was missing. I remembered having them on the window still but I know we didn’t pack them up. I called the hospital and they only found a cell phone charger. This really stressed me out. We rushed packing and went to the pharmacy to get my medicine and found out that they couldn’t fill it out because they couldn’t read the doctor’s name. If it’s not one thing, it’s another thing. We drove back to the hospital and went to my room and found nothing. Our Ipod touch and mouse was gone but not the charger. I don’t think the nurses took it because they didn’t even know what an Itouch was but obviously after we left anyone could have came in and took it. I was so upset!!! Nothing was going right.


After that drama, I went to the hospital pharmacy and realized I didn’t have my ID (it was at home so poor Karl had to drive home to get my ID). I was getting more and more upset. Then after he got back, we opened some mail and found a “photo” speeding ticket. What a day! Lastly, Samanta was 6 minute late getting Carlita due to a train crossing and daycare called us and are charging us a late pick up fee. Damn it!!!! What else, what else can go wrong? Karl was very sweet and got me flowers and a family figurine from Willow Tree. He’s so sweet! I’m very lucky to have him and his even-tempered personality to balance out my emotional state right now.


We did have good news today with Luke. His chest X-rays were improving. They showed us all his x-rays from birth day one. The X-rays showed that his lungs were closed off (you can tell by the white, cloudy coloring). The most recent X-ray showed his lungs were starting to open (there were more dark spots) which was very good news. Dr. Stuartz was very pleased and decided to stop his pavulon (this was the medicine to make him paralyzed so he can be relaxed). It was also making him too paralyzed, which is not good because you need to exercise your muscles. He was also off the phototherapy for jaundice so at least we had a good day with Luke.


So after a day like this, I moved into the NICU family room and hung out at Luke’s bedside until 11pm. After pumping, I headed to bed and watched a bit of the Opening Ceremonies. I needed mindless activity after this unlucky day. Hopefully tomorrow we are more lucky.

Thursday, August 7, 2008: A whirl mill of emotions

Last night was pretty tough for Karl and I. We took turns sitting by Luke through the night. Karl took the first shift until 2am then Lulu until 5am. Luke was definitely having some problems. All his numbers were going down, rather than up. His O2, which originally was great, were getting worst. The nurse practitioner talked with the doctor on call and they decided to put Luke on a morphine drip in order for him to get relaxed. He was getting over stimulated and not allowing himself to get relaxed and let the medicine or the ventilator work for him. They also changed to a different breathing machine called the oscillator. It vibrates and makes a sub-woofing sound in order to get the CO2 “bubbles” out of his lungs. They also put in a line into his belly button in order to have another source to draw blood and give his morphine drip. He also has Pre-ductile and post-ductile to measure his oxygen flow. There’s a lot of terminology that we are learning quickly. Last, he received a transfusion in order to boost his red blood cell count. That really made a difference. Within a few hours, his red cell count was way up and his chest X-rays were clearing up. It was indeed a better day. I did cry a lot today because knowing that he’s sick and there’s nothing I could do to help him made me feel so useless. Luckily my milk came in and now I’m a pumping machine. Every two hours or so I pump away just thinking that this milk will eventually help him get better.


Throughout the day we got to do “care” with him (i.e. check his temperature and change his diaper). I had visitors come at lunch time (friends from work Kathleen, Cathy, and Michele) so I missed one care so Karl did it. I wish I were there because I guess Luke gave his father two poops and a nice stream of peep that bounced right off his finger and hit Luke in his eye. Good aim Son! Luke’s doctor, Dr. Stuartz, was very pleased with his progress but wanted to do some different tests to eliminate other causes for his condition. She ordered an echo cardio gram (ECG) to look at his heart to make sure it was working all right. The cardiologist (who happened to be very hot; almost McDreamy) looked at the heart structure, vents, etc. And Luke got a clean bill on his heart. So that eliminated the possibility that there was also a heart problem. He simply (if it can be very simple) has pre-mature lungs and RDS (respiratory distress syndrome). The doctor thinks he might also have an infection but not sure. Luckily he has been receiving antibiotics since day one so that should address that problem. The doctor wants minimum interruptions so we had a “family discussion” with my sister and mother in one of the NICU family rooms. We really did this in order to “chill out” my mother who was getting a bit overwhelming with all her questions and requesting to see Luke (which we were not allowing her to do). The doctor did great answering all the questions and trying to explain what was happening with Luke. Some tough things to listen to and understand but I think it satisfied my mother.


In the afternoon we received more visitors from work (Sarah, Sendy, Jimmy, Ivet, and Samanta) came to visit. My sister and mother came for dinner. We had take-out from Olive Garden – yummy. The night before we had Cuban food that Mother cooked which was delicious. The hospital food has been okay – breakfast and lunch has been really good but dinner is a different story. We have ordered almost every item and now we’re just making fun of the food. Everything looks like that cheap plastic food that kids play with. Not appealing at all. After tonight’s dinner, everyone left. Karl and I visited Luke until midnight and decided to sleep as much as we could. It was much needed after such a long day. Unfortunately, my mother wasn’t behaving herself at our apartment (i.e. waking up the girls and going through out stuff) and Karl had to drive home to make a “presence”. This chilled her out but wasn’t what we needed at midnight. Karl came back and we both fell asleep.

Wednesday, Aug. 6: Luke status

~Written by big papa Karl
It’s been a rollercoaster of emotions since Luke was born. I didn’t get to hold him for more than 5 minutes when he was taken away to the NICU. The first night we went to see him he was doing okay, but then he needed to have an IV and receive antibiotics. They did a C-pap (which means Continuous Positive airway pressure - a method of respiratory ventilation ). They started with this method to see if they could prevent the need for intubation, but it didn’t work so he had to have the tubes. He was put on a respirator, hooked up by a tube going down from his mouth into his lungs (orotracheal intubation), in order to help him breathe. However, we found out today that his lungs were not opening properly to let out his carbon dioxide, so the CO2 began to build up. The doctors handled it well, though, providing him with the enzyme, Surfactin and increasing the rate of respiration. The parents, however, not so much…we have been anxious, worried, scared, exhausted and all this terminology has been like a spinning whirlpool of words and letters (CO2, O2, RDS, GPS, oh wait, that’s not….):


We had a lot of visitors to help us through this rough spell. Lulu’s sister and mother got here the day of the birth and have been a great help in taking care of Carlita. They brought Carlita to visit with Lulu and meet Luke today, but the experience was a little overwhelming for everybody. Karl picked Carlita up from day care and the plan was to meet everyone back at Lulu’s room. However, when we got there, the room was deserted and the nurses told us Lulu had gone with Samanta and Sami (colleagues and friends from work) to visit the baby. Daddy got Carlita to put on her “I’m the Big Sister” shirt, but then Karl made the not so wise choice of taking Carlita down to the NICU also (hello—lots of babies on machines, mommy in wheelchair, doctors, nurses running around—daddy was not using his noggin very well), and of course Carlita was startled, overwhelmed and scared. She allowed daddy to pick her up and look at Luke, but I don’t think she understood that it was Luke; then she asked mommy to pick her up and carry her, and mommy of course was in a wheelchair and couldn’t pick her up, so she had a meltdown in the middle of the NICU and down the hallway back to the room. Then, there were all these people packed together in lulu’s room, so she continued to be fussy for a while. But thank goodness Sandra’s baby Sofia was there. Gradually Carlita ate some food and played with Sofia, and calmed down. She even expressed a stunning revelation, after looking inquisitively at mommy’s tummy—“Luke not in mommy’s belly?” She continued to play with Sofia and family/friends for a while, but soon she ran out of steam, became cranky and had to leave. Daddy walked her out to Sandra’s car and helped put our car seat in Tia’s car. On the way, she wanted to hold Sofia’s hand, and when she could not, she began crying. When daddy put the car seat in the car, she was so excited to sit next to Sofia. She is going to be an amazing Big Sister!


Gradually Luke’s CO2 levels have come down and the doctors are now decreasing his level of extra oxygen and respiration (from the machine). We have been visiting him regularly, talking and reading to him, but he seems to be a very sensitive baby (whenever babies started crying or alarms went off, he would “desat,” which meant that his oxygen levels were dropping (his breathing was disregulated). So we have had to be careful to just sit, talk or read quietly next to him, and we haven’t been able to touch him as much as we’d like (much less hold him), so it has been really hard. However, the night nurse Alicia was great, telling us all about what they were doing with Luke, and she even allowed Lulu to take his temperature and Karl to change his diaper (meconium—it was so sticky and Karl was doing a good job of smearing it all over his butt—and then Luke pooped twice to give Karl more opportunity to practice his poop smearing skills): But his CO2 levels have dropped to the levels they want, and they have decreased the rate of respiration (and the oxygen level has stayed low), so we are hopeful that he will be able to come off the respirator soon.

Week 35: A Luka-size Surpirse

After last week’s ultrasound, we had a relaxing weekend. Karl and I both got massages and had a date to a Ragtime concert here on campus. Sunday we spent it at the pool just lounging around.


Monday, Sept 4, 20 we all got up, had breakfast and Parents as Educators came over to work with Carlita. (This is a free program in the school system that helps children be prepared for school. After Chris left (the instructor), Karl went to work and I waited for my friend, Samanta, to come pick Carlita and I up (She had borrowed my car for the weekend). Roughly 9:30am she arrives and Carlita and I headed out to get into the car. All of a sudden, I felt a rush of liquid and I thought to myself – great I peeped on myself. But it wasn’t pee but blood. There I stood looking down at my pants as they turned red and Samanta, who was sitting in the car, looked at me. Carlita started getting nervous and said “Mommy you have red pee”. Yes, honey lets get into the car. Samanta got her in while I called my doctor’s office who directed me to triage at the hospital. Samanta got a couple of towels from our bathroom and I stripped off my pants right in the middle of the street. I really didn’t care because it was gross to be in. We got Carlita into daycare and off to the hospital we went.


Karl met us there and right into triage we went. I was still bleeding and starting to get cramps. They decided to admit me and took us to High Risk. There the doctor on call reviewed what can be happening. Since I have placenta pervia, the cervix could have started getting relaxed and the placenta start bleeding. It looked like it had slowed down so they were going to monitor me and try to keep the baby in as long as possible up to 37 weeks. Wait a minute! You mean that I would have to be o bed rest in the hospital for two weeks. Yes was the reply. Well I didn’t like that idea and I don’t think Luke liked that idea because at roughly 2pm I started getting more contradictions, fast and painful. They took me to get a bio ultrasound and while there more blood came. I couldn’t get any medicine because they didn’t know if I would be getting a C-section right away or not. After the ultrasound, they wheeled me back to High Risk and right away they determined that I was going in for a C-section. I had lost a lot of blood and had so much pain.


By 4:30pm, my sister and mother arrived right in time before they wheeled me off to OR2 for the C-section. By 5pm I was getting prepped for the C-section. Karl looked quite handsome in his blue outfit, and we had latin music pumping as Luke was pulled into this world at 5:27pm. He weighed in at 5 lbs and 11 oz and is mighty long at 19 inches. He cried a lot and has a good patch of dark hair on his head. After they finished sewing me up, we all moved to the recovery room. I got my favorite thing – the bear hug which helps you keep warm and get rid of the shakes, which I had. Luke was a bit too grunting for the nurses and they looked him over and determined that he needed to get to the NICU right away. I got to hold him for a few minutes before he was taken away in an incurbator. We got hourly reports on how he was doing, as we spent four hours in the recovery room. Because he’s late pre-term, his lungs didn’t have everything needed for him to breathe on his own. They were evaluating him for Respiratory Distress Syndrome and doing x-rays, giving him antibiotics, and an IV. He did come out kicking strong but probably wore himself out. Poor baby! He’s my little kickboxer!


After 4 hours in Recovery, we got move to the maternity ward to a private room. Right away we wanted to go see him but the NICU was a bit busy and he was in the nurses’ observation room, which no one can go into. We had to wait until 11pm when they called us to let us know we could come visit him. We got to the NICU and found our little boy all hooked up but looking good. His coloring was so much better and he was calmer. We held his hands and talked to him. The nurse told us that he was doing quite well considering his age. His weight and height is helping him because he’s actually large for a pre-term baby. After hearing more about what they did for him (review this website http://www.nhlbi.nih.gov/health/dci/Diseases/rds/rds_treatments.html) for more information, we came back to our room so I can start pumping and for us to get some rest.


So it was quite a surprising day. One month from his due date, Luke came into the world. I’m doing fine, recovering from the C-section. This birth was such a different experience compared to Carlita’s birth, who was overdue. Bleeding, emergency C-section, and NICU are all new experiences for us. We are very lucky that we had our friend, Samanta, with us and that my sister and mother came so fast. Carlita hasn’t seen her little brother but tonight she will. I will keep you all informed on how things are going and when we’ll be heading out of the hospital. Welcome Luke to Lukaland!!!